Kyle's NICU Story in Pictures

Thursday, November 12, 2009

Update on EEG

I got a phone call from Kyle's Neurologist the other night. He explained a little bit what the results of Kyle's EEG were - we have an appt in December so I am sure we will discuss it more then. The findings of the EEG were abnormal - which in my book isn't so bad b/c we have been told it will always be abnormal - b/c he will be compared to other kids his age and his brian developed 1/2 out of the womb which just plain makes things different. His connections and electrical activity is expected to be different. So that didn't sound so bad. The main finding we discussed was that his background activity was slow and spread out. well to a mom that sounds pretty rough - but Dr. Clark assured me that this statement is referring to the electrical activity in the brain... not kyle's cognitive ability. Well - so does generally slow and spread out electrical activity affect kyle's cognitive ability? Theoretically the answer is yes - it does and it will. the clinical answer is "we shall see". and as of right now - kyle's brain looks immature and kyle looks immature - so that matches. but kyle is progressing in learning and concepts - and so there is not a reason to think (even according to the neurologist!) that this would stop. So I obviously felt much better after speaking to him. Slow is just not the word you want to work with when they are talking about your child's brain!

So here is my take - I don't like the punches that feel like they come out of no where. They are hard to swallow and feel like they knock me back to standing in the NICU. that sickening feeling of not knowing. but here is how I will look at it. Kyle has to fight harder and I will help him. I do believe the Lord is healing him. He will be able to sort shapes and do puzzles - it might just take more work. So work we will do! I will use this as a reminder that Kyle needs to work hard and that means me working hard! I guess as moms we all need that reminder sometimes. Thanks for praying - I could not have a better group of friends that keep me focused during moments of stumbling. I love you all!


prayfordalton said...

So glad that you have some peace of mind. It seems like when you're a preemie mom one answer can create 100 new questions. We drive ourselves crazy over thier well being and future. Truth is, they will probably become doctors and lawyers and take care of us when we are gray I will pray vigorously that both Kyle and Dalton continue to OVERCOME!

amyoutlaw said...

I ditto what Dalton's mom says. I remember seeing on TV a young girl go through a brain surgery that removed 1/2 of her brain!!!! She was still functioning at the same level after the surgery (with intense therapies of course) as b4 the surgery. It was AMAZING! Apparently her brain rewired itself. I learned that young brains can actually create new pathways to compensate for the lost ones. Adult brains cannot do this of course. So keep on praying and keep on working!!! Like my husband's now-adult preemie friend, Kyle could be a PhD in neuropsychology like him.

Keep the faith!!


Sandy said...

John & Kelly,

I write to you as a complete stranger whose name will not be at all familiar. I'm still not sure what drew me to your site today - 2 years later - but wanted to share how that came to be. I was at also in the NICU with my twin girls when Kyle arrived. I remember seeing your family in the waiting room for the first time and on several occasions thereafter along with the all too familiar anguish that faced so many of us parents in the NICU.

I wanted to reach out and offer my support but never knew how to without feeling as though I was intruding. I overheard John one day in the hallway talking to someone on the phone telling them about a website called, "Pray for Kyle" and proceeded to do just that: Pray.

Somewhere between what was normal life and what became normal life after leaving the NICU, I still had not managed to visit the website but often thought about Kyle and prayed for his well-being. Don't ask me why over 2 years later, I just now visited the site. I found myself reflecting upon an upcoming family trip and began thinking back in time to those days in the NICU which in turn, brought me back to Kyle.

I cannot express my heartfelt joy in knowing that he overcame and made his way home. It brought tears to my eyes knowing that he is in your presence surrounded by so many who love him.

Please know that he will continue to be in my thoughts and prayers as he has been over the last couple of years but with new exciting goals to reach moving forward :)


Lacey said...

Hey Kelly. My daughter Hadley is in Kyles class. Anyway, a friend is organizing the 40 days for life campaign and heard your husband sing the other day. She was asking me if I knew his contact info but this was the only way I knew how to get you. :) If you don't mind could you send it to me. My email is If you don't mind erasing this post after you read, I'd appreciate it.

Hope you guys are doing well. Thank you!!

Lacey Morgan

Lacey said...

Ha...imagine that...if I search yahoo with your husbands name I can find his site. LOL. I sent her his website so she could contact him and his band. Thanks Kelly. Hope you guys have a great weekend!

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!